My Autism, Colette Evangelista- Fellow Fridays

“My autism is a part of who I am, like the sound of my laugh and the color of my hair….”

At this point and time I am a dinosaur. Ten years ago when I noticed that my son seemed a bit “off”, Google predominately said that the three signs of autism were “non-verbal, doesn’t make eye contact, not affectionate”. Or something to that effect. My son was a hugger. He had 12 whole words (for a solid year). It can’t be autism. When I questioned our pediatrician at a chronic ear infection visit, he got frustrated that my son kept flipping the lights on and off and opening the cabinet doors over and over. He was however extremely impressed that a 15 month old could write the most perfect alphabet on the crinkled paper covering the examination table using crayons. His expert opinion was that I was a “first-time mom” hypochondriac.

When the diagnosis actually came, it knocked my feet out from underneath me. It would take years before I would even begin to find my equilibrium again. Why? Because I hit the hamster wheel. Fix it. Fix it. Fix it. Try this. Try that. Do this. Do that. Diet. ABA. Therapy. Shots. Horses……. WHERE IS MY MAGIC WAND?!?!? Everyone else seemed to have one.

One night I lay in bed choking on my fear and failure. I got up, went downstairs, banged out “My Autism” in about twenty minutes, and then promptly forgot all about it. For 3 years.

I gave up. Not totally. I would never do that. Too much at stake. But I let go of the intensity of it. I did my best. I started to realize that I sucked at implementing ABA in our day, but I was good at pushing my son outside his comfort zone. I tried to give him as much solid nutrition as possible but didn’t cry over another night where I allowed Dominos to be for dinner.

And one typical day in the middle of the week, my son was standing in our kitchen. I looked at him and had a breathtaking moment of clarity. He was perfect. As he was. I no longer saw “autism” flashing on his forehead. Autism was one part of who he was, but certainly not all of it. Autism was now neutral. How did that happen? When did that happen? For years it was something to fight. To fix. What total crap. What a total waste of energy. My son deserved to have every part of him loved. And that included the autism. How could I have conveyed that there was a part of him that was not right? That his beautiful self could have aspects to it that were scary and broken?

Let’s be clear. I had to stop right there. I had already spent years punishing myself with the guilt of all the things I had done wrong. Or worse, there were the “right” things I didn’t do enough of. Now my energy would be directed at acceptance. “Dear Lord…please help me to love with kindness and without judgment or agenda.” It was time to celebrate all the good and do our best with what we had to work with.

And then I remembered “My Autism”. I went back and looked at it. I wrote THAT? This positive story from a child’s perspective about having autism? But that wasn’t MY truth at the time. How could I have done that?

It’s been said that…as autism advocates….it is our job to be the voice of those who need help communicating their message. “My Autism” is my son’s truth. This is our kid’s truth.

“My autism is a part of who I am, just like the sound of my laugh and the color of my hair….”